with complex medical needs in nursery. Ruth Thomson explains.
Four-year-old Oscar Thomas is one of an increasing number of children entering nursery with complex medical needs. The rise stems largely from advances in modern medicine, resulting in increased survival rates of premature babies, more effective treatment of congenital and genetic conditions and better outcomes for children following severe illness or injury.
In Oscar's case, he has a neurological condition that continues to baffle his doctors but affects both his physical and cognitive development and has other complications. For the past 18 months, he has attended Vanessa Nursery School and Cathnor Park Children's Centre in West London, where the team has looked after his medical needs and, as importantly, given priority to his social and emotional development.
RT Can you tell me about Oscar's medical history?
Sarah Thomas, Oscar's mother Oscar was born with claw hands, arms bent at the elbow, dislocated hips and talipes - club feet. The doctors have diagnosed arthrogryposis, which causes curved joints in parts of the body, and myotonia, which makes Oscar hypermobile and his muscles prone to contracting for a prolonged period.
In addition, he has only one functioning kidney and some cognitive delay, long-sighted vision and a squint, and one pair of ribs missing. The doctors have no idea where this condition came from, nor what it will lead to. It's a total mystery. So, as well as treating his known conditions, doctors are monitoring him for possibly related conditions, such as sleep apnoea.
He's had a lot of corrective treatment for his feet and hips, so from birth to two months both legs were in plaster; from six to 12 months, he was in a hip spica cast (from his under-arms to his toes). Every year, he spends a month with one leg in a cast and outside of that he wears a splint.
It has been tough, especially in the early days when one thing after another was being diagnosed, and it's hard to see him not running around with his peers. But he's special to us and such a sociable little guy, and that sees us through. We just keep our fingers crossed that he'll be able to grow up to be self-sufficient.
RT What is Vanessa's approach to supporting families like Oscar's?
Michele Barrett, head of centre Sometimes parents can find it difficult to focus on the whole child, as their child's complex medical needs have taken priority during perhaps the first months and years of their lives.
As well as feeling anxious about their child's health, perhaps long stays in hospital have created problems with attachment and conversations with medical staff tend only to reinforce what their child can't do. So we take a holistic approach, focusing on children's strengths, and aim to rebuild a family's belief in the capacity of their child to have a good life and progress.
How do you deal with Oscar's medical needs day to day?
Tanya Phillips, key person We have a great relationship with Oscar's mum and she feeds back information from the medical professionals and keeps us abreast of hospital appointments, medication and so on.
We speak to her or Oscar's nanny every day, and the whole team are briefed and debriefed daily on his medical and related needs - for example, kidney problems leave him prone to infections, so we may have to monitor his fluid intake more carefully.
Oscar takes a daily 5ml dose of medicine for his kidney condition. I am usually the one to check the medications board and sign for and administer the medicine, but all staff are trained in the procedure. As for the other essential paperwork, we use Forms 2 and 3a, which can be downloaded from the DfE website.
Having a good relationship with the family and gathering all the information you can is vital when caring for a child with complex needs. For example, Oscar's condition makes him feel the cold more than other children, so we know not to encourage him to head outdoors on chillier days.
RT What have been your priorities for Oscar?
Tanya When Oscar started nursery, at three years and four months, he clearly had some developmental delay, but it has been hard to determine what is due to his condition and what stems from his limited early experiences.
To help him progress in all areas, we prioritised the Prime areas. When he started nursery, his motor skills were poor. He had a dominant leg and would hold on to things as he moved around. He also had some language delay and he was already seeing a speech and language therapist.
Our top priority has been Oscar's social and emotional development. Because his early life revolved around hospitals, he had little experience of engaging with other children and was used to having everything done for him - so he might sit in his coat waiting for somebody to take it off. We also wanted to make sure that Oscar always felt 'at home' in the nursery.
RT How do you plan for Oscar's development?
Tanya Oscar attended part time for three terms and has been full time for two. Once a term, our Special Educational Needs Co-ordinator and I meet with the other professionals involved in Oscar's care - including occupational and speech therapists - to agree priorities for his Individualised Education Programme, which we then review half termly.
I also meet with Oscar's parents once a term to discuss his progress and interests. We decide on two learning intentions for the term and I take these to the nursery team to map out how Oscar can reach these goals.
RT Can you tell me some of the ways in which you have enabled Oscar to progress?
Tanya We try to follow children's interests, and in Oscar's case that means trains! Initially, when his play was so solitary, we let him play with trains on his own, then gradually moved them into the sand tray, water tray, everywhere ... It took two terms before he accessed all areas.
Trains also represent stability for him. So each time he goes to hospital we make sure he can return to his favourite trains to avoid unsettling him. We also make the journey to hospital sound fun if he is appearing despondent and look out for signs of tiredness when he returns.
Oscar is naturally resilient - crawling around for a month because of his leg cast didn't bother him - but we've tried to develop that resilience, and independence. So our targets for him have included hanging up his coat and preparing his own toast at snacktime. We've always aimed to challenge him and promote a 'can do' attitude - and recognise his accomplishments.
His gross physical skills have been built up through big apparatus, obstacle courses and swimming; we are lucky to have our own indoor pool. He then progressed to using chunky crayons on large pieces of paper, and from there to lots of practice using tools, hole punches and specialist scissors. We're now moving on to drawing exercises recommended by the occupational therapist.
As for his language and confidence, we've worked hard to help him develop the language to interact with others. He now engages well with other children and is at a stage where we're looking to empower him by making him realise that sometimes you can say 'no' and express your views.
We've also homed in on his love of story and singing. I recorded one of his stories and retold it to the whole group, which boosted his confidence and has encouraged him to illustrate and share his stories more readily.
RT How do the other children respond to Oscar?
Tanya The children are so in tune with each other that Oscar's physical limitations are never a problem. However, we do reinforce that natural empathy by modelling 'good' behaviour and talk to the children about the need to value and respect each other.
RT What progress has Oscar made?
Tanya Oscar's journey has been amazing and the gap between him and his peers has narrowed enormously. Progress in one area of development feeds into another, so his improved physical skills have enabled him to engage more with other children, so building both his language and PSED.
Other professionals can't believe it when they see him balancing on apparatus. He now draws well and tries to write his name. He interacts a lot more with other children, including in imaginative play, and his vocabulary is good. Now he'll give everything a go, and he's so pleased and proud when he's accomplished something.
RT How do you feel about the progress Oscar has made?
Sarah There is still underlying delay - you can see that in his attitudes and conversation, which are very different from those of his peers. But he has a will to learn, and his escalation at nursery has been phenomenal.
He really needed that third-party involvement and professional input to take charge of his interests and introduce more constructive play like painting. Come Monday morning, he's keen to get back to nursery.
MORE INFORMATION
- Managing Medicines in Schools and Early Years Settings includes a set of ten forms including Form 2: Healthcare Plan and 3a: Parental Agreement for School/Setting to Administer Medicine, http://webarchive.nationalarchives.gov.uk/20130401151715/http://www.education.gov.uk/publications/eorderingdownload/ managing%20medicines%20nov%2007%20version.pdf
- Supporting Pupils at School with Medical Conditions: statutory guidance for governing bodies of maintained schools and proprietors of academies in England, www.gov.uk/government/uploads/system/uploads/attachment_data/file/306952 /statutory_guidance_on_supporting_pupils_at_school_ with_medical_conditions.pdf.
